Cultural Approaches to Pediatric Palliative CareThis guide to cultural information for patient care below is designed as a resource for improving interpersonal relations, increasing understanding, and furthering world class service for the UMass Medical Center diverse patient population. By heightening awareness, enhancing communication and developing better cultural competence we keep patients first: http://libraryguides.umassmed.edu/diversity_guide

The Single Fathers Due to Cancer program is dedicated to helping the thousands of fathers who each year lose their spouses to cancer and must adjust to being sole parents. Remarkably, few resources are available for fathers and very little is known about the unique challenges they face and how to best help them through this enormously difficult time. This website offers support, information, and resources to fathers as they adjust to being sole parents and work through their grief and that of their children. The site also provides information for health care professionals in oncology and clinical settings. http://www.singlefathersduetocancer.org
The program was featured in the NY Times: http://well.blogs.nytimes.com/2013/04/22/a-lifeline-for-widowed-fathers/?ref=health

Division 54- Pediatric Psychology Evidence-Based Assessment Resource Sheets
The following evidence-based assessment resource sheets are intended to offer a summary of the evidence base for standardized measures in different outcome domains. The first set of assessment resource sheets were developed following the evidence-based assessment review series published in JPP in 2008, and represent general resources pertinent to pediatric psychology assessment. http://www.apadivisions.org/division-54/evidence-based/assessment-resources.aspx

NOW AVAILABLE: Voicing My CHOICES: A Planning Guide for Adolescents & Young Adults
Voicing My Choices was developed by researchers at the Pediatric Oncology Branch, National Cancer Institute and the National Institutes of Mental Health at the National Institutes of Health and is designed to help young people living with a serious illness to communicate their end-of-life care preferences to friends, family and caregivers. TO VIEW/ORDER: www.agingwithdignity.org/vmcTO LEARN MORE:"Allowing Adolescents and Young Adults to Plan Their End-of-Life Care"

The Society of Pediatric Psychology Committee on Science and Practice has been working with the membership to develop an Evidence-Based Practice resource library to host on the Division 54 website at the following url: http://www.apadivisions.org/division-54/evidence-based/index.aspx
The first part of the library is now complete, which includes about 30 fact sheets to provide accessible information on the prevalence, etiology, consequences, and evidence-based psychological assessment and treatment of common pediatric conditions. From the main EBP Resource page, you can click on "fact sheets" or go directly to:http://www.apadivisions.org/division-54/evidence-based/fact-sheets.aspx
These fact sheets are the result of the outstanding collective effort of over 75 SPP members who made contributions to writing or reviewing fact sheets (see complete list of contributors on the web page). I want to extend a special thank you to all of these members!
The second part of the library includes evidence-based assessment resource sheets that will provide summaries of standardized measures in different outcome domains. These resource sheets can be found at:http://www.apadivisions.org/division-54/evidence-based/assessment-resources.aspx
We are planning to develop additional EBP resources on evidence-based interventions. Please feel free to share your comments and ideas about the new EBP resource library with me at tonya.palermo@seattlechildrens.org<mailto:tonya.palermo@seattlechildrens.org

The Psychosocial Support and Translational Research Program of the NCI has developed several resources for providers to use with their patients and families. These include games, a therapeutic workbook, and educational materials. These materials are available at no cost. To view these materials please visit: Psychosocial Support Resources

Five Wishes ®(Aging with Dignity)Five Wishes® lets your family and doctors know:

Who you want to make health care decisions for you when you can't make them.

The kind of medical treatment you want or don't want.

How comfortable you want to be.

How you want people to treat you.

What you want your loved ones to know.

Five Wishes® has become America’s most popular living will
because it is written in everyday language and helps start and structure
important conversations about care in times of serious illness.

Five Wishes® Online was introduced in 2011, allowing people to complete Five Wishes®

on screen and print out a personalized document immediately. Five Wishes® meets the legal requirements in 42 states and is useful in all 50. It is now available in 26 languages.

CancerCarehttp://www.cancercare.org/Visit CancerCare’s website for frequent updates and information about new events and cancer news. CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.

CancerFIGHTClubTo connect people, resources, and support services in the Canadian community to help “Fight the Fright” of young adult (AYA) cancer.www.cancerfightclub.com

The Cellie Cancer Coping Kit
To help address children and caregivers’ need for emotional support during pediatric cancer treatment, The Children’s Hospital of Philadelphia (led by Dr. Meghan Marsac) developed the Cellie Cancer Coping Kit(Cellie Kit). The Cellie Kit is a developmentally-targeted (ages 6-12 years old), research-informed tool designed to help children and parents cope with cancer treatment. It provides evidence-based, cognitive-behavioral coping techniques for a range of stressors. The Cellie Kit can be used across settings (at home, at clinic, during procedures) and providers (nurses, doctors, child life specialists, therapists). The Cellie Kit includes a stuffed toy (Cellie), coping cards, and a caregiver book. Cellie is used for engagement and integrated into the coping tips. The Cancer Coping Cards are a set of 30 cards which provide kids with over 100 tips for dealing with cancer-related stressors such as medical procedures, hospital visits, and feelings of fear and uncertainty. The Caregiver Book offers tips for parents to help children with cancer cope, as well as advice for dealing with parents’ own cancer-related challenges (e.g., caring for siblings, working with the medical team). For more information about the Cellie Cancer Coping Kit, visit www.celliecopingkit.org or e-mail cellie@email.chop.edu.

Cure 4 Kidswww.Cure4Kids.orgSt. Jude Cure4Kids is a Web site dedicated to improving health care for children with cancer and other catastrophic diseases in countries around the globe. Cure 4 Kids provides continuing medical education focusing on cancer, pediatrics, oncology, and global communication tools to health care professionals and scientists worldwide. Explore this free resource and start collaborating worldwide!

Health Care Toolboxwww.healthcaretoolbox.orgA health care provider's guide to helping children adn families cope with illness and injury. Includes patient handouts which may be downloaded, informaiton on assessment tools and quick interventions, and information on understanding patient perceptions.

Mattie Miracle Cancer Foundationhttps://www.mattiemiracle.com/
Mattie Miracle is dedicated to finding better treatments for and building awareness of pediatric cancer. The Foundation is committed to addressing the psychosocial needs of children and families living with pediatric cancer as well as educating health care providers on the impact of such a diagnosis on children and their families.

Re-Missionwww.re-mission.netA computer game developed by HopeLab, a non-profit organization, for adolescents with cancer.

ShopTalk
ShopTalk is a therapeutic game designed for children living with cancer or another serious illness.
It was created by Drs. Cindy Mamalian (an artist and psychologist) and Lori Wiener to help therapists lead conversations with pediatric patients about difficult emotional issues related to the illness that has affected their lives (ages 7 to 16 years). ShopTalk players visit 10 different “shops” around the board, choosing one of 6 “gifts” from each store to place in their individual shopping bag when they choose to answer the question. The shops are named according to different themes: The Ball’s in Your Court sports store, for example, allows players to explore how they would respond to various social scenarios during treatment.
ShopTalk is available in three versions, one for pediatric cancer patients, one for their siblings, and one for children whose parent have cancer. All questions in both versions of the game are written in Spanish as well as in English. Therapists who are interested in obtaining a copy of the game should contact Dr. Wiener directly at wienerl@mail.nih.gov.

This is My World
This workbook was designed as a psychotherapeutic tool for therapists to use when working with children and adolescents who have been diagnosed with a chronic or potentially life threatening illness. The pages within the workbook contain writing, drawing, crossword puzzles, and other fun activities that address items such as family, friends, favorite activities, coping, and loss. Children and their families enjoy going back years later to read what they had written about their journey of living with their illness. Those interested in obtaining copies of the workbook should contact Sima Zadeh at zadehsl@mail.nih.gov.

Katie Finds Her Courage
This book was written for families who have a child with neurofibromatosis type 1 (NF1). It tells the story of a child who is learning about having NF1 in words that children can understand and then finds the courage to share the information with her class. The book has activities for the child to engage in, a glossary of terms, and tips for teachers. PDF available for download at: http://pediatrics.cancer.gov/scientific_programs/psychosocial/educational.asp

Disclaimer:While we tried to include potentially useful resources, this website is not exhaustive. New and additional resources may be available. Please let us know if there is a journal article, book, or resource you would like to be included.